CA-125 Levels-Good/Bad?

groundeffect
groundeffect Member Posts: 639 Member
edited March 2014 in Ovarian Cancer #1
In Aug. 2002 I was admitted to the hospital with a pumonary embolism caused by deep vein thrombosis, which I now understand was most likely symptomatic of the cancers that were discovered when I had a biopsy at the hospital (uterine Stage 1B) and the ovarian (Stage 1C) that was uncovered in the subsequent hysterectomy. I've had six rounds of taxol/carboplatin chemo (ended 1/21/03), and am finally growing back my hair. The doctor who admininstered my chemo is not my oncologist, due to the logistics of my hometown. My CA-125 level came back (after my last chemo treatment) at 24, which I understood to be acceptable, but after reading a lot of the messages on this board showing women with lower levels, I wonder if I should be concerned. The Johns Hopkins site has info indicating that 35 or lower would be desireable. Can anyone shed some light on this for me? My doctor has not expressed concern at all, but then, I did have to ask if he was going to have a CA-125 test done in the first place.

I have some numbness in my upper left leg because of the removal of lymph nodes for testing during the surgery, and some numbness in my right leg which is probably from the DVT, but otherwise I feel quite fine and did not suffer weight loss from the chemo.

My prognosis is very good because of the low stages of both cancers. I would love to hear from other women who have had the combination, and from any one who can give me a quick description of what I should be looking for in CA-125 levels.

Comments

  • qbox
    qbox Member Posts: 1
    #2
    hi, I each year I have my CA-125 taken I get a lump in my throat. I guess, for me it was always a mark of improvement if it didn't change. Mine always register at 24. I took a bold step this year and requested not to have it drawn. But I am in a unique situation since I have been out for over 11 years from Ovarian 3c. So, hang on to the good results:) it is a bench mark. I have heard there may be other markers out there. I couldn't tell you for sure what they are called. This is the first time in over 10 years that I have felt like I could participate in this type of forum. Good luck, be strong and develop positive thoughts.
  • mary8242003
    mary8242003 Member Posts: 1
    #3
    qbox said:

    hi, I each year I have my CA-125 taken I get a lump in my throat. I guess, for me it was always a mark of improvement if it didn't change. Mine always register at 24. I took a bold step this year and requested not to have it drawn. But I am in a unique situation since I have been out for over 11 years from Ovarian 3c. So, hang on to the good results:) it is a bench mark. I have heard there may be other markers out there. I couldn't tell you for sure what they are called. This is the first time in over 10 years that I have felt like I could participate in this type of forum. Good luck, be strong and develop positive thoughts.

    I had a hysterectomy 11 years ago too and I always have my blood CA125 done for cancer cells.I get scared at times. I was wondering if it was bad not to have it done or too just have it done anyways.Eleven years for me is alot.
  • mirtle
    mirtle Member Posts: 32 Member
    #4
    I was diagnosed in 1993 with Stage IV ovarian cancer. I had a total hysterectomy and six rounds of taxol and cisplatin. My CA125 was checked every three months. It was down to 12 after chemo and surgery. It started to rise during my eighth year of remission. It hit 60 and then it would jump to 100 and then back down again.
    CT scans, etc. showed no sign of the cancer. Finally, when it hit 1000, the scans showed three small lesions. The CA125 continued to rise to 3,900. When I mentioned to the therapy nurse how high it was, she told me that she had some patients whose CA125s were in the 200,000 range.
    I am currently in chemo again and have been since January 2002. First they treated me with Doxil and then my CA125 started to rise again. So, I'm back on the taxol but this time with carboplatin. I have very little hair. I think the only reason why I have hair is because someone told me about Nioxin. I'm getting a little tired of it but I continue to fight. Good luck.
    In the grand scheme of things, 33 is really good and I wish that is what mine was. The CA125 is a quirky test and sometimes it is not accurate. Keep monitoring.
  • groundeffect
    groundeffect Member Posts: 639 Member
    #5
    mirtle said:

    I was diagnosed in 1993 with Stage IV ovarian cancer. I had a total hysterectomy and six rounds of taxol and cisplatin. My CA125 was checked every three months. It was down to 12 after chemo and surgery. It started to rise during my eighth year of remission. It hit 60 and then it would jump to 100 and then back down again.
    CT scans, etc. showed no sign of the cancer. Finally, when it hit 1000, the scans showed three small lesions. The CA125 continued to rise to 3,900. When I mentioned to the therapy nurse how high it was, she told me that she had some patients whose CA125s were in the 200,000 range.
    I am currently in chemo again and have been since January 2002. First they treated me with Doxil and then my CA125 started to rise again. So, I'm back on the taxol but this time with carboplatin. I have very little hair. I think the only reason why I have hair is because someone told me about Nioxin. I'm getting a little tired of it but I continue to fight. Good luck.
    In the grand scheme of things, 33 is really good and I wish that is what mine was. The CA125 is a quirky test and sometimes it is not accurate. Keep monitoring.

    Thank you so much, Mirtle. The more I learn, the more questions I have, and I have the feeling that I don't get more than I asked for when I ask my doc questions!

    I hope you do well with the taxo/carboplatin therapy. I got tired of it after the 4 months of it that I had, and was very glad to be done with it. You are giving it a good long fight, and I'm sure you've got a good shot at victory!
  • groundeffect
    groundeffect Member Posts: 639 Member
    #6
    qbox said:

    hi, I each year I have my CA-125 taken I get a lump in my throat. I guess, for me it was always a mark of improvement if it didn't change. Mine always register at 24. I took a bold step this year and requested not to have it drawn. But I am in a unique situation since I have been out for over 11 years from Ovarian 3c. So, hang on to the good results:) it is a bench mark. I have heard there may be other markers out there. I couldn't tell you for sure what they are called. This is the first time in over 10 years that I have felt like I could participate in this type of forum. Good luck, be strong and develop positive thoughts.

    Thank you for sharing, and I will hang on to the good results. I've got a lot of positive thoughts, but this whole process is disconcerting, and this is my first attempt to seek out other women who have had the experience. I do feel very fortunate to have had both cancers found in such early stages, but having to have the surgery so quickly really set me back. I'm glad you're sharing with us, and hope you'll continue to do so for a good long while!
  • mirtle
    mirtle Member Posts: 32 Member
    #7
    groundeffect said:

    Thank you so much, Mirtle. The more I learn, the more questions I have, and I have the feeling that I don't get more than I asked for when I ask my doc questions!

    I hope you do well with the taxo/carboplatin therapy. I got tired of it after the 4 months of it that I had, and was very glad to be done with it. You are giving it a good long fight, and I'm sure you've got a good shot at victory!

    Thanks for the words of encouragement. I've had a lot of practice with all of this. If I can help you with other questions, please let me know.
  • Oby
    Oby Member Posts: 5
    #8
    Hi, "groundeffect." I just got on this website today. First heard about it through some TV commercials. I just read your email about CA-125 tests and thought I'd add my two cents.
    In July 2000 I was diagnosed with ovarian cancer. Had a year of feeling GREAT after my chemo, during which time my CA-125 tests stayed in the 6.0-7.0 range. (During this time I was living in Phoenix and Seattle. My doctor's in both places told me that the 'normal' CA-125 range was 0-35.) I moved to Illinois in November 2001, and in January 2002 my cancer reared it's ugly head again, and I discovered that the 'normal' range for a CA-125 HERE in Illinois is 0-45. Don't ask me why -- that's just the way it is.
    Anyway, by the end of my second round of chemo, the farthest "down" that my CA-125 came was in the 20.0-23.0 range, which, needless to say, concerned me, although my doctor kept telling me that as far as he's concerned, "It's not the numbers that count, Oby. I base what's happening on 'how you're feeling.'"
    Well, I finished that round of chemo the beginning of May. And then, in August my cancer came back AGAIN. This time we had to change my chemo because I had started to develop neuropathy in my feet and hands, and I chose Topotecan.
    Since August I have been doing a round of Topotecan every 3 weeks, meaning that every 3rd week I have a 5 day treatment. After the treatment is done I have blood tests done the following Monday, and the following week blood tests and a CA-125.
    So far my CA-125 has only gone down to 67.7, and once again my doctor is telling me that, "I'm not concerned so much with your 'numbers,' but more about how you're feeling."
    Me? I'm still very concerned with the 'numbers.' However, there doesn't seem to be much I can do about that -- and I continue to take the Topotecan since at least, it seems to be keeping my cancer under control.
    I don't know if what I've said has helped you. I hope so.
    Oby Thomas in Naperville, IL
  • mamie60_2000
    mamie60_2000 Member Posts: 2
    #9
    hi groundeffect i just read your message.i can relate to you.ive been thru alot of what you are going thru.i was at the age of 27 now 35 and doing good.i was always serching for info.never really got the info i wanted.but enyhow ive been cancer free for 8 years.i feel wonderful back to my old self again.i hope you will get there soon.i believe god is good and god is great.i will pray for your speedy recovery. sincerely mamie
  • mirtle
    mirtle Member Posts: 32 Member
    #10
    Oby said:

    Hi, "groundeffect." I just got on this website today. First heard about it through some TV commercials. I just read your email about CA-125 tests and thought I'd add my two cents.
    In July 2000 I was diagnosed with ovarian cancer. Had a year of feeling GREAT after my chemo, during which time my CA-125 tests stayed in the 6.0-7.0 range. (During this time I was living in Phoenix and Seattle. My doctor's in both places told me that the 'normal' CA-125 range was 0-35.) I moved to Illinois in November 2001, and in January 2002 my cancer reared it's ugly head again, and I discovered that the 'normal' range for a CA-125 HERE in Illinois is 0-45. Don't ask me why -- that's just the way it is.
    Anyway, by the end of my second round of chemo, the farthest "down" that my CA-125 came was in the 20.0-23.0 range, which, needless to say, concerned me, although my doctor kept telling me that as far as he's concerned, "It's not the numbers that count, Oby. I base what's happening on 'how you're feeling.'"
    Well, I finished that round of chemo the beginning of May. And then, in August my cancer came back AGAIN. This time we had to change my chemo because I had started to develop neuropathy in my feet and hands, and I chose Topotecan.
    Since August I have been doing a round of Topotecan every 3 weeks, meaning that every 3rd week I have a 5 day treatment. After the treatment is done I have blood tests done the following Monday, and the following week blood tests and a CA-125.
    So far my CA-125 has only gone down to 67.7, and once again my doctor is telling me that, "I'm not concerned so much with your 'numbers,' but more about how you're feeling."
    Me? I'm still very concerned with the 'numbers.' However, there doesn't seem to be much I can do about that -- and I continue to take the Topotecan since at least, it seems to be keeping my cancer under control.
    I don't know if what I've said has helped you. I hope so.
    Oby Thomas in Naperville, IL

    Oby, my doctor said the same thing "I'm not too concerned about the number, its more about how you're feeling." As I said in my first reply, the recurring cancer didn't show up in any scans until my CA125 was well over 1000. My doctor told me that when your CA125 is only 60, 70, even 100, it means that there is SOME activity somewhere but it is probably very small or even microscopic. My CA125 now is just under 1000. I have been getting chemo for a year. I am non-symptomatic. If it weren't for the cancer, I'd be pretty healthy. I guess what I'm telling you is don't get all wacky over the number. It will just drive you crazy. I've had mine checked every three months for the last 9 1/2 years. I freaked when it started to climb but it was three or four more years before they could see anything on a scan.
  • groundeffect
    groundeffect Member Posts: 639 Member
    #11
    mamie60_2000 said:

    hi groundeffect i just read your message.i can relate to you.ive been thru alot of what you are going thru.i was at the age of 27 now 35 and doing good.i was always serching for info.never really got the info i wanted.but enyhow ive been cancer free for 8 years.i feel wonderful back to my old self again.i hope you will get there soon.i believe god is good and god is great.i will pray for your speedy recovery. sincerely mamie

    Hi Mamie60_2000, thank you for the well wishes and encouragement! I'm feeling better all the time, but I'm still inspecting myself all over for anything "suspicious" although I probably wouldn't recognize it if I felt it! It's good to hear from a long time survivor. Thank you for the prayer, too. I find myself doing that for other people more and more, and will for you, too! All the best.
  • groundeffect
    groundeffect Member Posts: 639 Member
    #12
    Oby said:

    Hi, "groundeffect." I just got on this website today. First heard about it through some TV commercials. I just read your email about CA-125 tests and thought I'd add my two cents.
    In July 2000 I was diagnosed with ovarian cancer. Had a year of feeling GREAT after my chemo, during which time my CA-125 tests stayed in the 6.0-7.0 range. (During this time I was living in Phoenix and Seattle. My doctor's in both places told me that the 'normal' CA-125 range was 0-35.) I moved to Illinois in November 2001, and in January 2002 my cancer reared it's ugly head again, and I discovered that the 'normal' range for a CA-125 HERE in Illinois is 0-45. Don't ask me why -- that's just the way it is.
    Anyway, by the end of my second round of chemo, the farthest "down" that my CA-125 came was in the 20.0-23.0 range, which, needless to say, concerned me, although my doctor kept telling me that as far as he's concerned, "It's not the numbers that count, Oby. I base what's happening on 'how you're feeling.'"
    Well, I finished that round of chemo the beginning of May. And then, in August my cancer came back AGAIN. This time we had to change my chemo because I had started to develop neuropathy in my feet and hands, and I chose Topotecan.
    Since August I have been doing a round of Topotecan every 3 weeks, meaning that every 3rd week I have a 5 day treatment. After the treatment is done I have blood tests done the following Monday, and the following week blood tests and a CA-125.
    So far my CA-125 has only gone down to 67.7, and once again my doctor is telling me that, "I'm not concerned so much with your 'numbers,' but more about how you're feeling."
    Me? I'm still very concerned with the 'numbers.' However, there doesn't seem to be much I can do about that -- and I continue to take the Topotecan since at least, it seems to be keeping my cancer under control.
    I don't know if what I've said has helped you. I hope so.
    Oby Thomas in Naperville, IL

    Hello Oby, Thank you for relating your experiences in CA-125 numbers. The more I read, the more I realize that there aren't standards for normal and abnormal ranges. I'm going on with the assumption that as long as I feel as well as I do now, after having feeling lousy for so long last year, that I'm doing well. I hope you're comfortable with your doctors, having moved as much as you have.

    What you said certainly helped. I wish you the best of luck on your journey!
  • StyleWriter
    StyleWriter Member Posts: 4
    #13
    Oby said:

    Hi, "groundeffect." I just got on this website today. First heard about it through some TV commercials. I just read your email about CA-125 tests and thought I'd add my two cents.
    In July 2000 I was diagnosed with ovarian cancer. Had a year of feeling GREAT after my chemo, during which time my CA-125 tests stayed in the 6.0-7.0 range. (During this time I was living in Phoenix and Seattle. My doctor's in both places told me that the 'normal' CA-125 range was 0-35.) I moved to Illinois in November 2001, and in January 2002 my cancer reared it's ugly head again, and I discovered that the 'normal' range for a CA-125 HERE in Illinois is 0-45. Don't ask me why -- that's just the way it is.
    Anyway, by the end of my second round of chemo, the farthest "down" that my CA-125 came was in the 20.0-23.0 range, which, needless to say, concerned me, although my doctor kept telling me that as far as he's concerned, "It's not the numbers that count, Oby. I base what's happening on 'how you're feeling.'"
    Well, I finished that round of chemo the beginning of May. And then, in August my cancer came back AGAIN. This time we had to change my chemo because I had started to develop neuropathy in my feet and hands, and I chose Topotecan.
    Since August I have been doing a round of Topotecan every 3 weeks, meaning that every 3rd week I have a 5 day treatment. After the treatment is done I have blood tests done the following Monday, and the following week blood tests and a CA-125.
    So far my CA-125 has only gone down to 67.7, and once again my doctor is telling me that, "I'm not concerned so much with your 'numbers,' but more about how you're feeling."
    Me? I'm still very concerned with the 'numbers.' However, there doesn't seem to be much I can do about that -- and I continue to take the Topotecan since at least, it seems to be keeping my cancer under control.
    I don't know if what I've said has helped you. I hope so.
    Oby Thomas in Naperville, IL

    Hello...This is my first day on this site. What stage was your cancer, and how did they know it was back? CJ
  • StyleWriter
    StyleWriter Member Posts: 4
    #14
    I have not heard that pulmonary embolism or deep vein thrombosis is symptomatic of ovarian cancer. My surgery was in May 1999 (Stage 1A). Since then I feel weakness in my right ankle and left inner thigh, which suggest to me a problem with veins, but no doctor will agree with me that these symptoms should be of concern. (But, knowing how doctors often miss something until it is too late, I am concerned!). Please reply...CJ I can also be reached at: kimmchikatt@yahoo.com
  • groundeffect
    groundeffect Member Posts: 639 Member
    #15
    StyleWriter said:

    I have not heard that pulmonary embolism or deep vein thrombosis is symptomatic of ovarian cancer. My surgery was in May 1999 (Stage 1A). Since then I feel weakness in my right ankle and left inner thigh, which suggest to me a problem with veins, but no doctor will agree with me that these symptoms should be of concern. (But, knowing how doctors often miss something until it is too late, I am concerned!). Please reply...CJ I can also be reached at: kimmchikatt@yahoo.com

    Hi CJ, I'll reply to the forum, because I think people should understand the how DVT (pulmonary embolisms are caused by DVT)can be symptomatic. Here's a link that will take you to the Mayo Clinic's page on pulmonary embolism (http://www.mayoclinic.com/invoke.cfm?id=DS00429). To use just one sentence of their text: "Some types of cancer, especially pancreatic, lung and ovarian cancer, cause increased blood levels of procoagulants — substances that contribute to blood clotting."

    In looking back to the past 5 years or so, I had swelling in both ankles at diffent times and attributed it to strain. I realize now it may have been early warnings of DVT.

    Of course, I'm no expert, but you should persue those weaknesses. In her book "Cancer Schmancer" Fran Drescher says she had leg pain that was ignored prior to her diagnosis of uterine cancer, and that she's heard from many women who have had the same experience.

    If you do an internet search and include "DVT" and "Cancer" in the search, you'll find more references. Best of luck, and if you'd like to email me via the CSN network, please do! Just click on the "letter" icon...
  • pennyk
    pennyk Member Posts: 11
    #16
    Oby said:

    Hi, "groundeffect." I just got on this website today. First heard about it through some TV commercials. I just read your email about CA-125 tests and thought I'd add my two cents.
    In July 2000 I was diagnosed with ovarian cancer. Had a year of feeling GREAT after my chemo, during which time my CA-125 tests stayed in the 6.0-7.0 range. (During this time I was living in Phoenix and Seattle. My doctor's in both places told me that the 'normal' CA-125 range was 0-35.) I moved to Illinois in November 2001, and in January 2002 my cancer reared it's ugly head again, and I discovered that the 'normal' range for a CA-125 HERE in Illinois is 0-45. Don't ask me why -- that's just the way it is.
    Anyway, by the end of my second round of chemo, the farthest "down" that my CA-125 came was in the 20.0-23.0 range, which, needless to say, concerned me, although my doctor kept telling me that as far as he's concerned, "It's not the numbers that count, Oby. I base what's happening on 'how you're feeling.'"
    Well, I finished that round of chemo the beginning of May. And then, in August my cancer came back AGAIN. This time we had to change my chemo because I had started to develop neuropathy in my feet and hands, and I chose Topotecan.
    Since August I have been doing a round of Topotecan every 3 weeks, meaning that every 3rd week I have a 5 day treatment. After the treatment is done I have blood tests done the following Monday, and the following week blood tests and a CA-125.
    So far my CA-125 has only gone down to 67.7, and once again my doctor is telling me that, "I'm not concerned so much with your 'numbers,' but more about how you're feeling."
    Me? I'm still very concerned with the 'numbers.' However, there doesn't seem to be much I can do about that -- and I continue to take the Topotecan since at least, it seems to be keeping my cancer under control.
    I don't know if what I've said has helped you. I hope so.
    Oby Thomas in Naperville, IL

    Can you tell me how long you have been on the Topotecan and what your effects were?

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